When physical health and mental health collide – stigma ensues. 

Earlier this week I felt unwell and ended up calling my out of hours doctor, who decided I needed to attend my local emergency room. There followed a bit of a mad panic as the first responder medic arrived who duly began taking down my details and telling me an ambulance was on the way. My daughter ran around trying to get some things together to take with us as the medic began to do basic observations like blood pressure. A short time later the first of three paramedics arrived at our home and they began to do more tests, I live in a remote rural area so the hospital and ambulance station are miles away.

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The paramedic did some heart tracings and sugar levels and things and I tried to stay calm, except deep inside I felt anything but calm. My chest hurt like hell and I was starting to panic a little, all this attention was unsettling and when more paramedics arrived I felt well overwhelmed. Inside I was trying to communicate telling all my alters; the different parts of me, that we were going to be ok. I kept trying to reassure them and explain what was happening and what was likely to happen next.

A few heart tracings later and I was being whisked to the emergency room in an ambulance, the ECG monitor still connected to my heart. I was given medication to help with the symptoms and that in turn helped calm me down thankfully. On my way to hospital I remember telling inside that it was ok we’d probably be home later and all would be well, except I really wasn’t sure what was going to happen. The paramedic was great he asked me about any other health conditions and I’d said I have Dissociative Identity Disorder and he wanted to know more about it, he’d never come across it before.

The hospital staff were at first quite helpful, they did more tests and then we just had to wait for results. But then I noticed a change in attitude, it was odd but after I’d been put in a hospital gown and my arms and their scars were visible it seemed to change things. I’d like to think they were just busy but I realise actually it was more than that, there is and I guess always will be a stigma attached to self harmers and I was a prolific self harmer not that many moons ago.

I was sat alone in the hospital as relatives were not able to stay with the patient, something to do with space apparently. Yet for the little parts of me that meant fear and doubt creeping in, there we  were alone in a busy environment and so much chaos going on around us. There were people being sick, people shouting, people clearly more unwell than me and it wasn’t easy for any of me to be there. I tried to keep reassuring my alters and settling them down, but I was still suffering pain and I felt woozy so it wasn’t ideal at all.

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At one point I felt on the verge of tears, but I daren’t cry for fear of being judged which in hindsight was a bit silly, after all I was already being judged by my scars. I tried to block the emotions pummelling through and at one point I texted my daughter who was sat in a nearby waiting room and said ‘I want to go home’.  I knew the pain was subsiding yet I felt tired even unwell, but I just wanted to feel safe and I didn’t there. Staff didn’t speak to me for quite a long time, in fact I think I sat waiting for the results for over 2 hours with no staff interaction at all. If I’m honest I felt quite abandoned and that was quite hard to deal with. Now I know most adults would find no interaction ok, some would maybe find it hard but they’d cope and yet I was there with chaos going on inside my head and I didn’t feel able to cope. I felt vulnerable, I felt exposed and I felt unsafe it was so hard to just sit there with a hospital gown on, things stuck on me and a cannula in my arm.

When I eventually had a chest X-ray that felt worse, my radiographer was a male staff member and for me that felt too scary. I didn’t have the courage to say I can’t do this, to say I have a trauma history that makes this too hard, so instead I retreated inward and felt as if I was no longer in control of me. Whoever came out did an ok job they kept us safe and they began to deal with the doctor too, when I came back the doctor was asking me more questions about my health history and of course my mental health came up.

I tried to explain I’m in the process of a medication reduction and as such I’m reducing my anti depressant, but of course that gave them something to hang a label on me. The conversation revolved around who was supervising the reduction, was I no longer depressed and why such a gradual reduction. The logistics of reducing meds is a whole other blog, but I tried to explain to the doctor and yet I knew I wasn’t making many inroads into the stigma she clearly held.

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When eventually they said I could go home I was utterly relieved, and so were the other parts of me after all none of us were enjoying this time. My daughter helped me get changed back into my own clothes and that felt a huge relief and then together we left the hospital. On the drive home I sat and talked inside reassuring everyone and thanking them too, for they had been helpful and stayed  as calm as they could. By the time I got home it was the early hours of the morning and I was truly ready for bed, I felt exhausted.

But perhaps because I have alters, because I have D.I.D going to sleep wasn’t a straightforward  option. Little parts of me had missed out on their cartoons and they felt agitated and unsettled by our visit to hospital, the chest pain which had now gone had frightened all of me. I knew trying to sleep wasn’t going to work, I also had at least one part who was steaming mad at the stigma we had encountered. I decided to acknowledge the frustration being felt, I said I understood how it made us feel and I reminded us of just how good we are. I told myself that they had no right to judge me and it was their problem not mine, after all I don’t mind my scars or my mental health history it’s just part of who we are. I can’t help my past but I can help how I let it influence today and as such I can chose to not let the stigma and archaic views of a few medical staff hurt me.

I did settled down eventually to sleep, watching cartoons in bed as I tried to relax and calm down different parts of me. Since then well we have had more tests and more pain, but we are working through it as a team my alters and me. I guess that’s what I’ve learnt this week that if I face situations that freak me out or unsettle me I can deal with them if I do so as a team. A few years ago I would have just dissociated not for a short period but for days, I wouldn’t have coped with the stigma either I’d have reacted to it.

Perhaps the last few days have shown me just how far we have progressed in terms of working collaboratively.  I realise now that I need to accept stigma exists and whilst I don’t like it I can’t change other people’s ignorance. That doesn’t mean I won’t fight to end stigma, of course I will and I’ll continue to challenge where I can attitudes that need changing. Having D.I.D is a challenge especially when you are physically unwell, people don’t understand  it and they don’t want to either. Guess I have to work at educating people about this condition after all that can only help people like me in the future.

 

Copyright DID Dispatches 2015

Self harm and the attitudes of medical professionals

Self harm and the attitudes of medical professionals

 

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This week I heard from a friend who had to attend her local hospital to receive treatment as a result of self harm and her treatment was unfortunately not very helpful. This led me to thinking about the times I either attended A & E or was taken there by the police for treatment, usually as a result of self harming or being deemed mentally unwell and requiring treatment.

It is nearly ten years since my first ever hospital admission, but for many months before I had hidden the self harm that was taking place. I tried hard to wear long sleeves to hide the cuts and dressings which I needed to stem bleeding etc. I was determined not to require anyone to know that I felt so desperate and confused that I could only survive by self harming. This was in the form of cuts, burns, starvation, restricting my fluid intake or overdoses, by the time I was admitted to hospital my self harm was a daily occurrence such was the turmoil I found myself in.

I hid my self harm from medical professionals, my family and my friends no one but me; I thought, knew I was living this life. I can recall going out for days with the children carrying implements in my bag ready to harm, and hibernating in bathrooms and cutting during these days out. I would feel myself getting so distressed during the day that I couldn’t survive any longer and so self harm took place. Yet once it was done and I felt a wave of release that I had punished myself which I felt I deserved I could then calmly walk back out and carry on with life.

I was confused to such an extent that I believed I needed to punish myself because that way I would be safe from others hurting me, and I was terrified that past abusers would come and hunt me down and hurt me. I even had a notion that because one of my abusers was my mother that I was bad as I had her blood inside me, thus if I bled enough I would rid myself of her badness.

Now all this time no one knew how much I was struggling, the GP knew I wasn’t too great but all they kept saying was ‘take time out and relax more’, and ‘all women go through these phases’.
They never asked if I felt suicidal or what scale my mood was, they did eventually arrange for me to see a doctor and thereafter just told me I was on a waiting list to see a psychiatrist. Yet in the meantime I was continually told to ‘hang in there’, occasionally they’d tell me things would improve.

Of course things just kept getting worse and when I attended the GP one day and I saw a different doctor who asked to test my blood pressure; because I looked like I was going to faint, he saw the wounds that by now littered my arms. Recent cuts had been deeper and the blood loss alongside starving myself wasn’t helping me feel any better. It was then that he made the call and I was suddenly being sent to the local psychiatric unit for assessment. At this time I realised my eldest child had sensed something was wrong and had suspected I was self injuring, but we had both said nothing until I was en-route to the unit.

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A & E staff from the start were slightly arrogant and mainly uncaring, if I had to attend as a result of cutting I lost count of the times I felt to blame by their attitude towards me. It was as if they weren’t best pleased to be treating me after all in their eyes I had self inflicted this injury upon myself, they never looked beyond the injury to the person. On only one occasion can I recall a doctor being helpful, he was actually concerned for me wanting to know why I hurt and was I getting help for my mental health. He treated me like a human being and not an attention seeking time waster which is what many other medical professionals seemed to treat me as.

The sad fact is the attitudes that I faced ten years ago still exist today, that means the medical profession has failed to learn about or understand self harming behaviours in a decade. That concerns me because I am aware of the efforts of so many different groups including government health organisations whose aim was to educate about self harm and improve outcomes for patients. A decade ago these organisation were trying to produce guidance to end the stigma that exists around those who self harm, if attitudes haven’t changed does that mean their efforts failed?

Self harm is not something we should ignore or take for granted for behind every scar, every injury there is human suffering. I didn’t harm for the fun of it and if I wanted to seek attention believe me I can think of lots of better ways of doing that. I wasn’t time wasting either, I was in acute emotional distress and I needed help. I couldn’t explain the anguish I was going through, the only way I could find to deal with the turmoil that was my life was to inflict injuries upon my own body.

Be that cutting, burning, overdosing or restricting the amount of food or fluids I took in, each act was either an attempt to deal with intense pain and turmoil, or the result of irrational thoughts. I wasn’t doing this because I enjoyed it, truth be known I hated myself for doing it, in fact I loathed my scars. The reality was I tried so desperately to avoid seeking medical attention as the last place I wanted to go to was A & E where I would be made to feel even more ashamed and be stigmatised.

Self harm controlled me a decade ago and at times of crisis it can still take control of my life today, it is sadly my default position when the pain is too much. Now when I lapse back into self harming I tend to injure in other ways in the hope it’s less visual, but it’s still harming all the same. Now I am not proud of the fact I self harm and I don’t want these feelings either, I would like to be free of self harm and yet I now understand it is a symptom of the life I lived as a child. A life which caused untold damage and will take a long time to deal with and heal from, my self harming is a symptom of my mental health not the cause.

The cause is my past and today I am having to face the harsh reality that I was betrayed, abused and psychologically damaged. Currently I am feeling emotions for the first time and I am starting to grieve over the fact I was hurt, I’m starting to come to terms with the dawning realisation that the horrific memories I hold and continue to recall don’t belong to my alters at all. They just carry my memories, and it was this body, it was me as a child and a teenager who the abusers defiled. Believe me that’s tough, it’s a harsh journey survivors walk there is a lot of pain and anguish that has to be processed and dealt with.

Perhaps when dealing with a person who is self harming instead of vilifying them and judging them medical professionals should remember to gently seek out the cause of this symptom. They should in my opinion treat those who self harm with the dignity, care and respect they so badly need, and they should afford them the right treatment to help them move forwards.

Copyright DID Dispatches 2014

 

 

 

Feeling labelled and judged

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There are many things that I; a person living with Dissociative Identity Disorder, finds difficult some of the difficult areas are as direct result of my condition, whilst others are a direct result of my past and my own self image.

Living life with a label isn’t easy, nor is it easy to live with the pressures that stem from society, a society that at times seems to view people who like me have endured a period of mental instability and illness in a different way.

If you look at my arms for instance they are littered with the scars of pain, I did at one point self harm on a daily basis it was how I survived. Today though my scars are faded there are times when peoples gaze is fixated upon them, they give an awkward inquisitive kind of frown and sometimes ask those questions that I wish they’d never ask. “Have you been in a fight with a cat” was the strangest question I ever had, but the usual is ‘”oh! did you do that yourself'”.

I’m not sure what people want me to say in these circumstances, but I have learnt over the years honesty is the best approach, yes occasionally it leaves others slightly shocked but I am in all truth no longer ashamed of the scars, they just reflect a period of my life. Yet I do find it hard that I am judged, often by those who have no idea what it’s like to be in that kind of intolerable pain that leads to self harm.

The same awkwardness can happen when I lose time, personally I get frustrated with myself its something I really hate doing and yet what’s worse is often the fact that people don’t always understand, I can’t help the fact I lose time or say the same thing over and over again in a slightly different way. Yet it means we stand out from the norm as as such are open to criticism and judgement.

When I was an in-patient in a locked rehab unit, a secure facility with an airlock as standard, the local taxi firm wouldn’t collect people from the unit, they judged without any real information. Ignorance I guess led people to hold a view that was without foundation and based upon stigma. The patients, well we were judged, it was as if we some how became pariahs just because we needed help and were being detained in this unit.

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As an informal patient there I regularly attended a local community group if a new person asked me where I lived I would just say the street name and not the place, I’d tolerate the comments of sympathy at having “those people as my neighbours”. they meant me of course but I never told them I was one of the patients.  I regret now not being brave enough to face them to let them say their piece and then reply “oh you mean me, I’m a patient.”.

Yet sadly medical people judged me too, some still do, I can recall countless times when I was judged and labelled those times when no matter what I said my views didn’t count, or they were ignored. I can recall being asked more than  once to undergo a breath test in one hospital, I hadn’t been drinking in fact I’d been on an Alpha course and had permission to attend. But it often over ran and thus they judged I must have been drinking or doing something I shouldn’t. It irritated me to be treated in such a demeaning way, undergoing breath tests, drugs tests, searches etc and all I had done was attend a local group, yet I knew complying was the only answer and so I accepted what was needed to be done to appease my jailers. I say jailers because they held the keys to the air lock and they dictated if and when I could go out even though I was a voluntary patient.

I am sure that I’m not alone in feeling judged or labelled, we are after all a society fixated on labels and psychiatry is full of them, we don’t seem to treat causes just a set of symptoms. We treat people as objects rather than human beings with feelings and emotions, can this be right. One of things I have found helpful recently has to be the fact that when I discussed how I was judged in my first psychiatric hospital with my psychologist he seemed to understand why I had done what I had.

If a patient acts out in a psychiatric unit they are seen and judged as aggressive or troublesome rather than as someone who is distressed and trying to demonstrate their feelings, their hurt and at times their frustration. Looking back I can see how if instead of labelling me, judging me and drugging me they had offered me help to understand and explore why I had reacted in the way I had it would have been far more beneficial to me, my alters and to the staff.

Today whilst I live in society and I’m a free person and no longer a patient I still find at times that I feel judged, now it maybe the case I am over sensitive to feeling this though perhaps it’s more likely that unfortunately some members of society find it impossible to not judged others.  Many people know I have had a difficult past, some even know I have D.I.D but at times it can feel that others don’t understand what it’s like being me, this person with many parts.

Yes it’s chaotic at times, life for me and my alters is never easy some days are better than others, but easy isn’t something we experience.  I don’t want people to give me sympathy, I am not asking for people to give me special treatment, I’d just like that they wouldn’t judged us when they haven’t walked even one hour in my shoes.

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Copyright DID Dispatches 2014